Bone Mets Thread
Comments
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oh my gosh! I love you ladies so much! I am trying to just breathe and stay calm even though it's very hard! Thank you all for your encouragement.
Hugs,
Shannon0 -
Hi Shannon,
I'm so sorry you are in that waiting place just now...it truly is awful, but do what you're doing...Just Breathe...
I also have a young daughter and a wonderful husband that are continuously on my mind so I know THAT fear.
But I also have, a great Oncologist who told me to unpack my bags...I wasn't going anywhere in a hurry!
I pray your scans come out clear Shannon. We're here for you.0 -
Shannon, I'm another with bone mets, I was straight in at stage IV last July. But since my first pet scan in February I've been NED, confirmed again in a second pet scan 3 weeks ago. I intend being around for a long time yet!!
I sincerely hope that your scans are clear, but I just wanted you to know that bone mets are not an immediate death sentence. We're all here for you, with fingers crossed, so please come back and tell us when you have news!
Nicky0 -
Hi Ladies. I can't sleep, so here I am. For everyone who has posted something to me, I thank you. You really are helping to ease my mind. One good piece of info is I had a brain MRI on Friday and it came back clear. Couldn't be happier about that! I promise I will let y'all know what my onc says tomorrow. I do think I'm going to get a second opinion this time though. Thanks again for all of your encouragement!
Hugs,
Shannon0 -
slgarcia- I'll chime in, too. Back in January of this year (at 35 with 2 young kids), I found myself where you are now. Thought I was Stage 2 from the onset with no node involvement, had finished my treatments (which began at 33) and thought I was moving forward when I randomly found out I had a met to my femur and a questionable node. I completely know the terrifying fear, but the ladies here and my entire treatment team calmed me down. I recently met with other Stage 4 ladies and was amazed to see some living very full lives as far out as 12 years from onset of mets. In fact, if you look at the picture of the 14 of us, I doubt that you would guess more than 1 or 2 had had cancer (and only then because they had shorter hair). Hopefully you get good news with your scan, but worst case scenario, even though it's not anything we would wish for, there are many amazing people who integrate this disease into a full life. I see that your pathology was the same as mine, so know that there are a variety of treatment options out there for you that are well-tolerated. Like the original diagnosis, even though my news wasn't what I had hoped for and was much harder to take than the first time around, I felt much better and positive when I had a treatment plan and felt that I was moving forward to keep this manageable. Praying for you...0 -
I forgot to update that I'm out of the hospital now! I got discharged Saturday night after spending 5 days there. Official diagnosis was Radiation Ileitis caused by the radiation to my L4 vertebra. I NEVER want to go through that again!0 -
Beth,
Glad you are back home. Sorry this happened to you. Makes me a bit scared as I'm doing 3 weeks radiation now on new bone met on spine. I have 2 more weeks to go.
I hope you heal well & not have any permanent damage from this.
Terri0 -
Hi Ladies,
I feel ike Im intruding on a really nice bunch of old friends talking over coffee. I do have a question I'd appreciate your thought about. I was just diagnosed with BC. 5cm, lob/duct mix, one lymph node. I am waiting for surgery (may have neo adj chem). The reason why I even found the cancer is I have been in significant pain due to what I am told is spondoarthritis. However, my rheum told me last visit that they couldnt really tell from the bone scan if it was arthritis or cancer and I would need a PET Scan (would have to go 400km for PET scan). Anyway, here is my question - My Calcium is always low when I have blood work. Do any of you have this? If so, do you have spurs or tumours or is it your bones are thinning. My reading says that Osteoblastic cancer causes low calcium - I'd very much appreciate your thoughts.
JAB0 -
How are you doing Shannon? Thinking of you...0 -
Bethcon - glad to read that you are out of hospital and on the mend. I've never heard of Radiation Ileitis - only the risk of pneumonitis after breast radiation.
jab - I just checked my calcium levels and mine have always been in the normal range (2.44, 2.42, 2.47 - range is 2.10-2.55) and I did have a bone met and radiation just recently.
400 km seems like a long way to go for scan but for me having the PET scan gave me such peace of mind. It showed us what we were dealing with and helped to make some decisions and plans.0 -
I am 42 and recently diagnosed with stage IV breast cancer with bone mets. I didn't know you could start off at stage IV. I immediately thought it was a death sentence. My cancer markers have gone from 6 to 4 so that is good. But I don't know what to expect. I feel as if I am always crying and no one seems to understand. I am glad I found this website. Maybe ill get some answers and peace of mind.0 -
Scoutmom, hey there, welcome. You are not alone. No one really understands this journey, except other ladies with Stage IV cancer. I've been on this board for a year, and it's been so helpful. These ladies will encourage you and help you get through each day.
Where are your bone mets?
One of the most useful things I've read on these boards is, Stage IV cancer is a marathon, not a sprint. You will have ups and downs in your treatment, and it's all kind of scary but you have made it through 6 months, and that's a lot! Wishing you the greatest of test results and the least amount of pain.0 -
Thank you Tarheelmichelle. I have tumors over 90% of my bones. Doctors said my cancer is too advanced for surgery or chemo. I didn't know a woman could be diagnosed with stage IV from the start.0 -
Scoutmom, it is not possible to have surgery with that many mets but there is no reason to say you could not try chemo. usually yyou start with the hormonal treatment which is much easier and works just as well if not better than chemo. a lot of us are also on a bone strengthening drug, such as xgeva. you may want to ask about it. tamoxifen tends to be protective of the bones so mybe that is why you,re not on it. its possible to live a long time so don't lose hope!0 -
jab,
There is a thread for those who are not stage IV, but concerned. You might want to check it out. It would be a great place to post your concerns. Wishing you the best.0 -
scout mom,
If your cancer has spread beyond the breast, metastasized, you can indeed be stage IV right out of the gate.Stage IV simply means it's no longer confined to the breast. I wouldn't say surgery is not possible but it's often not done as it doesn't appear to increase survival time once the disease has spread beyond the breast. There is some thought that removing the primary tumor reduces tumor load, and a few ladies here have had surgery once their mets have stabilized. I had a bmx with reconstruction two months before my bone met was discovered but in all likelihood, it was there at the time of surgery. What treatment is your onc. proposing? It is quite common for stage IV women who are ER+ To start off on an aromatase inhibitor, like Arimidex or Femara. Our situations are unique, and I'm not a doctor, but many stage IV women do have chemo. Did you ask your onc. Why he said no chemo? Take care.0 -
Hi Ladies. I am sad to report that the cancer is in my hip. I thought my femur b/c that is where it hurts, but it's in the hip. I had a clean brain MRI which is great news. I had a PET scan and a CT scan today and the doc called and said the only place that the cancer showed was in my hip and the one spot on my spine is still in debate. I have an MRI of the spine first thing in the morning. This is all great news for me. I am having surgery next week to put a steel rod in my leg/hip? because they are extremely worried it will break. I meet with the surgeon tomorrow. I know I will for sure get radiation, but not sure on chemo yet. He says the biopsy will determine our course of action. I am still scared, but have so much more hope now that I know more. Thank you all for your support. I will continue to post as I get info. Love, Hugs, and Smooches to you all!
Shannon
I didn't mention individual names b/c I am exhausted, but wanted to update all of you. So just know I've read all of your words and appreciate all of them!0 -
Shannon, so sorry to hear that your cancer is in the hip but be assured once you are healed with the pin you will feel so much better. I have a pin in my arm for the same reason.......fear of breakage........and once it was healed I have no problems with it at all. Please do let us know what else is proposed for your treatment and I wish you well.
Love n hugs. Chrissy0 -
Hi Scoutmom and welcome. So sorry that you have had this news but you have found a great place for information and support. Although you have extensive bone mets there is no reason why you can't beat the cancer back as there has been quite a few women on these boards over the years who have had dx just as yours, have been treated, gotten to stable and stayed there for a long time. The AI's are very powerful little pills and do work well with controlling bone mets but they do take a while to kick in and for results to be seen.
Keep coming back as you will find a wealth of information on here.
Love n hugs. Chrissy0 -
Shannon, my cancer was also in my hip, and I had to have the hip replaced because the doctor thought it was about to fracture. I also have a rod down my femur and a metal plate around the top if the femur. I started having radiation a couple of weeks after the surgery. The surgery was difficult, but I recovered pretty well. The radiation was easy. You'll probably have a lot of help from physical therapists. You should also try to get some occupational therapy. They help you with doing everyday tasks. Good luck and keep us posted.0 -
slgarcia- so sorry! like everyone has been saying, please be encouraged by women living full lives for much longer than you fear...especially with bone mets as compared to other mets. i'm not that far out from my mets diagnosis in January of this year (though i wonder if it was there all along), but i had a hip replacement at the end of march and recovered well. i started systemic treatment in march that i have found very easy to tolerate, and other than one metastatic lymph node, have had clear scans since the spring. I have two young kids- 2 and 5- and other than restrictions right after my hip replacement for a few weeks, i have fallen back into my normal routine and am grateful to be living a full life. best of luck as you move forward to keep this disease a chronic, manageable one.0 -
Shannon, Sorry you have joined our group . I also had a rod placed in my left femur and pin in my hip as I did have a pathological fracture. After surgery pain was so much better. I didn't realize how bad it hurt until it was fixed. Hope you get fast answers to your questions and begin treatment soon. Best of luck ! Redroan-from Iowa0 -
Hi Ladies. Ok, here is the CORRECT info after meeting with the surgeon. The tumor is at the very tip top of my femur, so not in my hip. He will put a titanium rod and screw in my femur. There is no fracture yet, but he foresees one if we don't fix it. I am in so much pain I just can't stand it. My surgery is Wednesday at 4pm. As for the MRI on my spine. It is still undetermined what the spot is but they think it's cancer, so once they biopsy my femur they will have a better course of action. I'm really scared, but more optimistic knowing all the other scans came back clear. I know I will always be looking over my shoulder now, and next time I won't wait a month to report any pain. Y'all have been so sweet to welcome me on here with open arms. I hate joining this group, but I can't think of nicer people to join it with. I'm so sorry we are all here. I will try my best to update after surgery. If you don't here from me right away don't worry. Also, my hubby updates sometimes if I can't. Wish me luck:)! Hugs!!!!!0 -
sigarcia,
Glad you know what's going on and you have a plan of action! I'll be thinking of you Wednesday, of course I wish you luck- fingers and toes are all crossed!
Nicky0 -
Praying for you slgarcia. I am stage 4 with Mets to my hip and I am now in remission, so stay positive, you will be alright. Hugs to You!!!0 -
Redroan, where in Iowa? Thank you ladies for your support. It truly makes this easier. This website was a lifesaver the first time around.0 -
Sigarcia, praying that your surgery goes smoothly.
Leah0 -
Shannon, Have you ever heard of a little town called Lake City, Omaha is the closest I have seen on here. Sounds like you had a good visit with Surgeon. . Glad you have more of a plan. Your hip will feel so much better when the fix it. I know mine did. I don't think I realized how bad mine felt until it was fixed. But I was dumb enough to keep walking on mine for a bout 5 wks and then found out if was fractured.
I also have a liver mets. But still look here for bone mets as I have more of them. Ct tomorrow, and Onc will decide on how many chemo treatments. Then chemo on wednesday.
So I will be thinking of you on Wednesday while I get chemo and hope that you surgeons hands are steady and your pain is relieved or at least more tolerable. Best of Luck to you!
Redroan0 -
Shannon and Redroan, I'll be thinking about both of you on Wednesday. Hoping the pain is less and the treatments effective.0 -
I will say a prayer for you on Wednesday. I've not heard of lake city.0
